Integrated Data Repository Mike Conlon, PhD Associate Director, UF CTSI The UF CTSI is supported in...
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Transcript of Integrated Data Repository Mike Conlon, PhD Associate Director, UF CTSI The UF CTSI is supported in...
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
Integrated Data Repository
Mike Conlon, PhDAssociate Director, UF CTSI
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
What if we had a repository …
• That contained clinical data from Epic for all patients in the health care system
• Combined that data with information regarding the patient’s willingness to participate in research
• Had information on labs, procedures, diagnoses, medications, biospecimens, genetic markers
• Had information over care events
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
How we’d like to have the answers
• Quickly – at our desks, interactive• Professionally – with full consideration of the
complexity of clinical data, translating our ideas into the details necessary for a an accurate result
• Securely –protecting patient privacy• Accurately• Across clinics and hospitals• Data available for analysis via appropriate
protocols, combined with additional research data
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
The 2008 PlanData integration lowers the barriers to using and more importantly, reusing data. By anticipating researcher needs building and operating interfaces between source systems and access for clinicians and researchers, we serve all goals of the CTSI: 1) barriers to interaction are reduced by providing data in easily accessible, standardized formats; 2) training programs are enhanced by providing access to substantial data resources; 3) access to advanced technologies is facilitated by making data from these systems available for analysis; and 4) new opportunities are created for collaboration by making standardized data available to all members of the CTSI across the state. Data integration work consists of collaborating with data source system providers and computational resource providers to develop data pathways leading to reusable, standardized formats available through access systems such as the CTSI Portal. CRU and TTRP source systems often must be integrated to intermediate computational resources for processing (Fig. 3). Molecular data and imaging data often require significant computation whose results must then be transformed into standard formats for access. Data format standards exist and are emerging across research and health informatics (83).
Once data are transformed they can then be organized for search and secured with access control standardized through IAM processes in an IDR. To integrate data in support of translational research we will adopt national standards for security, software and a data interchange (C.2.a), provide integration to emerging national repositories (C.2.b) and establish an enterprise architecture for informatics (C.2.c). The resulting integration of TTRP (C.2.d) and CRU (C.2.e) resources will result in integrated research database delivery (C.2.f). Using standardized access methods for data we will transform our practice of reusing data, thereby encouraging data reuse and sharing (C.2.g).
Integrated Data Repository
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
I2B2 Cohort Discovery
Patients 329,986Visits 1,786,999Procedures 9,957,757Diagnoses 12,388,053
Adding 600K procedures per month
IDR will double in size when Jacksonville is added in summer, 2013
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
Virtual Desktop Interface (VDI)• PHI from the IDR may be released to the
investigator– Under IRB approval– With a Data Use Agreement
• Data released from the IDR will be provided in a secure environment – a VDI that enable the investigator to analyze the data without having to move the data to insecure environments
• See http://vdi.ahc.ufl.edu to get started
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
IDR Timeline
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
IDR support and governance• The IDR is jointly sponsored by Shands and the
CTSI• The support team includes data modelers,
analysts, programmers, DBAs, ETL experts• A steering committee meets regularly to set
direction and monitor progress• For more information, please contact the IDR
project lead, Gigi Lipori ([email protected])
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
I2B2 Training and Sign on
• I2B2 training is available on-line at the IDR web site:– http://idr.ahc.ufl.edu/i2b2/i2b2-training-module/
• Once training is complete (10 minutes), you can apply for sign on to i2b2
• Once approved (next day), you can sign on to i2b2 at:– http://i2b2.idr.ahc.ufl.edu
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
Professional Services
• Professional services are available if your queries are complex, or you are unfamiliar with Shands clinical data, its coding and its nuances
• Professional services for developing cohorts and creating datasets is available at cost ($$)
• Contact Dr. Felix Liu ([email protected]) for an appointment regarding your IDR needs.
Consent2Share• Initiated on 9/11/12• Consent form given with admissions packet• Consent asks 2 questions
– Can we store your excess tissue with protected health information?
– Can we re-contact you for a future study? • Collected by admissions clerk, data entered into
EPIC, consent form scanned with other documents
• Patient’s physician can access pt response, answer questions
• Informed Consent Hotline to answer initial questions
• CTSI patient research advocate for more detailed queries
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
Results to date (>10,000)85% “yes” for samples79% “yes” for recontact
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
CTSI Biorepository• Biospecimen collection, processing and
storage. Stored biospecimens can be used by any researcher with IRB-approved protocols.
• Prospective biospecimen collection to fulfill investigator needs for IRB-approved protocols.
• Storage for biospecimens collected by investigators. Stored biospecimens belong solely to the investigator.
• Oversight of the release of biospecimens from the UF Department of Pathology for other IRB-approved research protocols.
• Pathology services including those provided by the Molecular Pathology Core and confirmation of diagnosis by a board-certified pathologist upon request.
One of two Hamilton Storage Technologies’ SAM -80°C automated sample management systems (Robotic freezers). The biorepository also has eight Forma Thermo Scientific -80°C Freezers with back-up CO2 and sensaphone alarm systems including back-up storage space, centrifuge for basic bodily fluid processing, QiaCube for small volume RNA, DNA and protein purification, Agilent Bioanalyzer for RNA, DNA and protein quality control analysis, OnCore BioSpecimen Management
Genetic Information from the UF & Shands Personalized Medicine Program
Challenge: genetic polymorphism of CYP2C19 leads to reduced ability to activate clopidogrel (Plavix) and increased risk of cardiovascular complication
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066
For More Information
On the web: http://idr.ahc.ufl.edu
The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066